Long-term medical and social outcomes of patients with Lennox-Gastaut syndrome

Objective: The aim of the current study was to investigate the long-term outcome in a large cohort of patients with Lennox-Gastaut syndrome (LGS). Methods: This was a longitudinal study (a retrospective database review with a telephone follow-up interview). All patients 18 years of age and older, with a diagnosis of LGS were studied at the outpatient epilepsy clinic at Shiraz University of Medical Sciences, Shiraz, Iran, from 2008 until 2020. The inclusion criteria were: multiple seizure types, characteristic electroencephalographic patterns [either bursts of slow spike-waves or generalized paroxysmal fast activity], with or without intellectual disability. Being lost on follow-up was the only exclusion criterion. Results: 78 patients fulfilled the inclusion criteria. All the patients were followed for one to 12 years (9.3 +/- 2.8 years). In the last follow-up (call), 14 patients (17.9%) were seizure-free for at least 12 months. Tonic seizure at diagnosis was associated with a poor seizure outcome (not seizure-free) (p = 0.045). Four patients (5.1%) reported having high school degree (diploma), four patients (5.1%) were married, and one person (1.3%) reported driving a motor vehicle; none of the patients were employed. Conclusion: A minority of patients with LGS (almost one in six patients) may enjoy a seizure-free state in their adulthood. However, very few of them could enjoy a healthy social life. While intellectual dysfunction may not be evident at the onset of the disease, cognitive impairment usually becomes apparent over time, and almost all patients would suffer from poor social outcomes in their adulthood.